Have to start the big three

Posted by Jo Ann K @jkiemen, Nov 28, 2017

I just got the results of my CT done yesterday. There are now enough changes that I am being asked to start the Big three. I have an eye exam tomorrow and then I guess I start. I really don’t cough much mostly feel like I have junk in the back of my throat only. Sputum inductions have not been successful so it will be hard to see if there is any improvement. I am really sad that I am advanced now to this stage. Many of you have already been there and beyond. Please share any advice on tolerating the medications.
JoAnn K

@jenblalock

Hi Joann, I’ve been on the big 3 plus some others. I was lucky and did not have bad side effects. Well, I should say that the Rifampin did not agree with me so they took me off that and put me on Clofazimine. Later I tried Rifabutin which I tolerated well so that was added. The meds did make me tired early in the day and I changed my taste buds so that foods didn’t taste the same and my appetite was less but for me that wasn’t a bad thing. For once in my life I didn’t have to watch everything I ate or gain weight. 🙂 I was on the meds for 15 months and have been off since April of this year. They did eradicate the NTM so treatment was successful.

They should start each med separately adding the new one each week. That way if you don’t tolerate one they’ll know which one it is. You’ll get your blood tested and eyes checked while on the meds. The doctors should explain all this to you. Ethambutol can affect the eyes and all the meds can affect liver and kidneys. Also if you end up on Amikacin you’ll want to get your ears checked regularly.

Best to you and let us know how it goes.

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@jenblablock – Correction – she DOES have bronchiectasis but not severely. She also has “shattered glass effect” rather than a hole in her lung but it can develop into a hole. I will ask her to ask about it at her next appointment.

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@jenblalock

Hi Joann, I’ve been on the big 3 plus some others. I was lucky and did not have bad side effects. Well, I should say that the Rifampin did not agree with me so they took me off that and put me on Clofazimine. Later I tried Rifabutin which I tolerated well so that was added. The meds did make me tired early in the day and I changed my taste buds so that foods didn’t taste the same and my appetite was less but for me that wasn’t a bad thing. For once in my life I didn’t have to watch everything I ate or gain weight. 🙂 I was on the meds for 15 months and have been off since April of this year. They did eradicate the NTM so treatment was successful.

They should start each med separately adding the new one each week. That way if you don’t tolerate one they’ll know which one it is. You’ll get your blood tested and eyes checked while on the meds. The doctors should explain all this to you. Ethambutol can affect the eyes and all the meds can affect liver and kidneys. Also if you end up on Amikacin you’ll want to get your ears checked regularly.

Best to you and let us know how it goes.

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@rosecurran I took the three meds for a year and I spread them out throughout the day. I took one around 8 or 9 am and then I took the second around 12 or 1 and then took the third around 6 pm. That was about a year ago so I don’t remember much else. I just know I didn’t take them all at once or close together and I made it through the twelve months. Nan

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@jenblalock

Hi Joann, I’ve been on the big 3 plus some others. I was lucky and did not have bad side effects. Well, I should say that the Rifampin did not agree with me so they took me off that and put me on Clofazimine. Later I tried Rifabutin which I tolerated well so that was added. The meds did make me tired early in the day and I changed my taste buds so that foods didn’t taste the same and my appetite was less but for me that wasn’t a bad thing. For once in my life I didn’t have to watch everything I ate or gain weight. 🙂 I was on the meds for 15 months and have been off since April of this year. They did eradicate the NTM so treatment was successful.

They should start each med separately adding the new one each week. That way if you don’t tolerate one they’ll know which one it is. You’ll get your blood tested and eyes checked while on the meds. The doctors should explain all this to you. Ethambutol can affect the eyes and all the meds can affect liver and kidneys. Also if you end up on Amikacin you’ll want to get your ears checked regularly.

Best to you and let us know how it goes.

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@rosecurran Hi Rose. I took all mine together after lunch but I didn’t have a problem with getting sick. I’d get a few stomach cramps sometimes and they made me sleepy but that’s about it. Sorry I couldn’t be of more help. I’m sure others will chime in. I’m glad they caught the infection before more damage was done to her lungs. I also have mild bronchiectasis but also some cavitary lesions (which are holes in the lungs). I don’t feel any effects from them though, now that the infection is cleared up. Like bronchiectasis, the holes never go away I guess, but as long as they stay the same and I feel fine, it’s nothing to worry about.

I do think that she is supposed to take all of each med at once. Like if she takes 4 ethambutol tablets she should take them all at once.

And good for her for staying active! It is very important to keep the lungs healthy.

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@jenblalock

Hi Joann, I’ve been on the big 3 plus some others. I was lucky and did not have bad side effects. Well, I should say that the Rifampin did not agree with me so they took me off that and put me on Clofazimine. Later I tried Rifabutin which I tolerated well so that was added. The meds did make me tired early in the day and I changed my taste buds so that foods didn’t taste the same and my appetite was less but for me that wasn’t a bad thing. For once in my life I didn’t have to watch everything I ate or gain weight. 🙂 I was on the meds for 15 months and have been off since April of this year. They did eradicate the NTM so treatment was successful.

They should start each med separately adding the new one each week. That way if you don’t tolerate one they’ll know which one it is. You’ll get your blood tested and eyes checked while on the meds. The doctors should explain all this to you. Ethambutol can affect the eyes and all the meds can affect liver and kidneys. Also if you end up on Amikacin you’ll want to get your ears checked regularly.

Best to you and let us know how it goes.

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@jenblalock , I think the hardest thing for all of us is getting used to our ‘new normal’.

Liked by Jen_b

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@jenblalock

Hi Joann, I’ve been on the big 3 plus some others. I was lucky and did not have bad side effects. Well, I should say that the Rifampin did not agree with me so they took me off that and put me on Clofazimine. Later I tried Rifabutin which I tolerated well so that was added. The meds did make me tired early in the day and I changed my taste buds so that foods didn’t taste the same and my appetite was less but for me that wasn’t a bad thing. For once in my life I didn’t have to watch everything I ate or gain weight. 🙂 I was on the meds for 15 months and have been off since April of this year. They did eradicate the NTM so treatment was successful.

They should start each med separately adding the new one each week. That way if you don’t tolerate one they’ll know which one it is. You’ll get your blood tested and eyes checked while on the meds. The doctors should explain all this to you. Ethambutol can affect the eyes and all the meds can affect liver and kidneys. Also if you end up on Amikacin you’ll want to get your ears checked regularly.

Best to you and let us know how it goes.

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I am not sure which formulations she is taking but I am on Rifampin which is supposed to be on an empty stomach ( one hour before or 2 hours after a meal) I take it one hour before my other meds( sometimes a little longer) then a little snack with the others together. If it is after a meal, I wait more than 2 hours because I still feel full and therefore think my stomach must not be empty.

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@jenblalock

Hi Joann, I’ve been on the big 3 plus some others. I was lucky and did not have bad side effects. Well, I should say that the Rifampin did not agree with me so they took me off that and put me on Clofazimine. Later I tried Rifabutin which I tolerated well so that was added. The meds did make me tired early in the day and I changed my taste buds so that foods didn’t taste the same and my appetite was less but for me that wasn’t a bad thing. For once in my life I didn’t have to watch everything I ate or gain weight. 🙂 I was on the meds for 15 months and have been off since April of this year. They did eradicate the NTM so treatment was successful.

They should start each med separately adding the new one each week. That way if you don’t tolerate one they’ll know which one it is. You’ll get your blood tested and eyes checked while on the meds. The doctors should explain all this to you. Ethambutol can affect the eyes and all the meds can affect liver and kidneys. Also if you end up on Amikacin you’ll want to get your ears checked regularly.

Best to you and let us know how it goes.

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Truth. I tell people I am now back to normal although I am not really sure what that is since I wasn’t even normal before diagnosis apparently.

REPLY
@jenblalock

Hi Joann, I’ve been on the big 3 plus some others. I was lucky and did not have bad side effects. Well, I should say that the Rifampin did not agree with me so they took me off that and put me on Clofazimine. Later I tried Rifabutin which I tolerated well so that was added. The meds did make me tired early in the day and I changed my taste buds so that foods didn’t taste the same and my appetite was less but for me that wasn’t a bad thing. For once in my life I didn’t have to watch everything I ate or gain weight. 🙂 I was on the meds for 15 months and have been off since April of this year. They did eradicate the NTM so treatment was successful.

They should start each med separately adding the new one each week. That way if you don’t tolerate one they’ll know which one it is. You’ll get your blood tested and eyes checked while on the meds. The doctors should explain all this to you. Ethambutol can affect the eyes and all the meds can affect liver and kidneys. Also if you end up on Amikacin you’ll want to get your ears checked regularly.

Best to you and let us know how it goes.

Jump to this post

Hi @jkiemen when I was on meds my biggest concern was compliancy,. So whatever it took for me to take my meds daily is what I did, even if it wasn’t exact protocol.

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